Category Archives: Monday Morning Musings

I sat down this morning to write up this week’s Take a Test Tuesday post. I took the test last week and I have my results and some notes written up so I wasn’t too concerned about leaving it until Monday to get it finished. Then, thanks to Tumblr, I discovered 2048.

The good news: I’ve gotten the 512 tile twice and I’m feeling pretty good about my chances of beating this thing

The bad news: There’s not going to be a Take a Test Tuesday post this week

This happens sometimes. Discover something new, accidentally lose a few hours, rearrange expectations for the day. In this case, I think it’s part stim, part perseveration. But sometimes it’s a new special interest or a new aspect of a special interest. Whatever it is, I’ve learned to stop (eventually) and ask myself what I’m not doing and why. Because this kind of time loss tends to be a sign that I’m avoiding something, at least in part.

The answer this morning is obvious. Writing is becoming harder and harder. I find myself writing less, putting it off. The frustrating thing is, my desk and my drafts folder are strewn with ideas for posts. I want so much to write, but the mechanics of it are increasingly making it a slow (if you’re curious how slow, this took me close to 45 minutes to write and edit), difficult process. I’ve also started to lose my feel for words, which is a bit scary. I write by how language feels and these days it mostly feels flat and lifeless. That’s making my writing increasingly literal and (to me, at least) boring.

Okay, so this post took a strange turn for the morose but I’ll leave it because it’s part of the breadcrumb trail documenting my language difficulties.

I’m going to give myself this week off from posting, I think. My daughter and her boyfriend are coming to visit later in the week (yay!) and we have lots of fun things planned. I’ll be back next Tuesday with a test for us to puzzle over. Until then, good luck getting that elusive 2048 tile.

Giveaway Winner

Congratulations to Tumblr user captain-irrayditation who is the winner of the weighted blanket giveaway. There were a ton of entries and I wish I was able to give every single person a weighted blanket. Hopefully there will be more giveaways in the not too distant future.

Looking for Input from Women Who are Late/Mis/Un-Diagnosed

I’m writing a pair of articles for the Autism Women’s Network about the high rates of late, missed and misdiagnosis in women on the spectrum. If you’ve experienced any of these and would be willing to be quoted in the article, please take a look at a short questionnaire I’ve put together to collect more information on the topic. There are five questions but feel free to answer even one if it applies to you and you’d like to participate.

It’s been a hard few days in the autistic community. So much pain. Again.

I’ve been thinking a lot about what to write and honestly I don’t have the words. I cannot even begin to make sense of what I’d like to say. Instead of adding my voice to the conversation about Issy, I’m going to share some of the pieces that have impacted me over the past few days. In case it’s not obvious, these are all very difficult reads that talk about abuse of disabled children.

Blogoversary!

One year ago Wednesday I made my first post on this blog. It was really scary until I realized that hardly anyone would see it . . .

Fortunately some people eventually found the blog and those people shared it with other people and things kind of snowballed from there. Rereading that post, I realize that my perception of what it means to be autistic has changed a lot in a year. (If you read that link, keep in mind that I had no idea what I was doing and I made some silly mistakes/assumptions that make me cringe now.) What hasn’t changed in the past year is my wish for this to be a place where people can share their experiences and knowledge and questions. You all have made that come true in ways I couldn’t have dreamed of a year ago.

Glitter stars for everyone!

Mail!

Earlier this summer I wrote an article for a quarterly magazine published by Autism West Midlands so I was very excited to get a copy of the magazine in the mail this week. Julia, who is absolutely lovely to work with, also sent me rainbow-themed bookmarks and stickers.

Doing What I Want Experiment: Week 2

Realizations from week 2:

24/7 self-improvement doesn’t work, or at least it doesn’t work for me. I’ve given myself permission to fall back on old habits occasionally if I’m feeling too vulnerable or uncertain. More on this in a future post because it feels important.

Convenience should not be a major deciding factor for fun activities. Fun or rewarding activities are worth investing extra effort in.

Being open to spontaneity is part of good decision making.“But I always . . .” and “But I never . . .” thoughts are not.

Being nice to myself is a valid reason for making a decision. I don’t need further justification.

For minor decisions, I don’t have to make the absolute best possible choice, I just have to make a choice I’ll be happy with. It doesn’t matter whether the Mai Tai will make me fractionally happier than the Margarita or I like the blue sweater slightly more than the red one. If I’ll be happy with either choice, I can choose on a whim and be done with it. I don’t have to try to be more happy or as happy as is humanly possible as the result of a decision. Buying a sweater is not the same as buying a car. Continue reading Monday Morning Musings (8/12)→

Doing What I Want Experiment: Week 1

Some reflections from the first week of my “What do I want?” experiment:

The first two nights I dreamt about making decisions. My brain is uber-serious about this experiment.

Side note: I’ve been having weird disturbing dreams all week. Not sure if that’s related to pushing myself out of my comfort zone with decision making or something else.

Decision making seems to be a multi-step process:

1. realize that a decision is required
2. sense my wants
3. align the wants with possible options for fulfilling them
4. choose among them based on convenience, preference, etc.

. . . okay, clearly more work is needed on the “just feel it” part of decision making

I made two big decisions:

The first was emotionally hard. I was proud of myself because I overrode my instinct to make the other person happy. It took a lot of effort but I felt accomplished when I decided to do what would be best and healthiest for me.

The second was a situation where I would normally have defaulted to making plans based on what the other person was doing, but I overrode that and thought about what I really wanted. The end result is I’m going to be doing something in the fall that I find a little scary but exciting.

I tried setting a 30-second time limit on minor decisions. Meh. I need a better strategy for minor decisions.

When a decision feels frightening, it might be because I don’t have enough information so I should ask for more details.

Funniest moment: The Scientist was rearranging the couch/hassock for TV watching and asked where I like to sit. I replied “however you like it is fine—no, no, wait, wait, in the hole” which he magically understood as “I like to sink into the crack between the cushions so put the hassock where I can do that and still put my feet up comfortably.” The magic of being married forever. Also, look at how I caught myself defaulting to his preference and changed strategies – yay!

Key realization: I’m an adult. I can decide how to use my time. If I’m bored, I can actively choose to do something else. This probably sounds stupid but I’m throwing it out there because it was a revelation to me. Continue reading Monday Morning Musings (8/5)→

Stop Signs

Thank you to everyone who shared their stop sign photos over the past week. We have a couple dozen so far. I’m going to post them next week so there’s still time to share yours! Don’t be shy.

From the Unfiltered Aspie File

Last Friday The Scientist and I went to buy dog food. We couldn’t find the usual brand so we were walking around the store browsing when I spotted an employee standing in a doorway near the back. I asked him about the brand I was looking for. He said it had been recalled and we talked about alternative brands. He seemed a little skittish as he said he would show me the brands he’d mentioned but I dismissed it as the usual sort of effect I have on strangers.

When we got out in the parking lot, The Scientist said, “Did you realize that the guy you asked about the dog food was standing in the doorway to the employee bathroom?”

“Uh . . . no?”

“He was drying his hands.”

*headesk*

All I saw was a doorway and a few cartons stacked against the wall, which led me to assume it was a storeroom. No wonder the guy looked so nervous.

Trainspottng

For the past few months I’ve been living across from a train station. It’s a small historic depot that still has freight and light rail commuter trains coming through all day and night. When we looked at the apartment, the salesperson cautioned us that the trains are required to blow their whistles as they come through the intersection at the corner. She warned they’d be louder in the front of the building.

We ended up at the back of the complex–for reasons that have nothing to do with the trains–but I still hear the whistles plenty loud. I can’t say I mind much. They give a rhythm to the day. And if it’s a freight train and it’s moving fast enough, I can hear the rumble of the engines–two or three usually–and the long line of cars they’re pulling.

Predictably, stereotypically, I’ve always been drawn to trains. The model train set I had as a kid. The big empty echoy boxcars that used to park behind my dad’s workplace. Trains I spied from the backseat, passing in front of our parked car and alongside highways. My first real train ride, through the countryside of a place as foreign and unreal as the new life I’d suddenly stepped into. Then, years later, living in the Southwest, where you can see an entire train at once, a hundred or more cars long, racing beside you on the highway, stretched out across a mesa, end-to-end, small against the infinite sky.

But it wasn’t until recently, standing beside the tracks, that I figured out the attraction for me: patterns and sounds. The resonance of the freight trains. Standing next to the tracks, feeling the rumble resonating in my chest is one of my new favorite sensory treats. That and watching the cars pass. Tankers. Box cars. Flatbeds. Grain cars. If you just stare at one point, you get car-space-car-space-car-space, over and over and over, at regular intervals,six of this kind, ten of that, almost never just one of anything.

Got Stop Signs?

In the comments on my infodumping post last week, a mom mentioned that her son’s special interest is stop signs. He’s 6 and he loves everything stop sign related. His teachers think this is a problem and try to discourage his interest. But his mom, who sounds like an awesome person, encourages him to do stop sign activities at home, both for fun and as a way to learn new things. That got me thinking that we could potentially make a little boy happy and show him that there are lots of adults who think that having a special interest isn’t weird or something to feel bad about.

So how about if we celebrate Tommy’s special interest by seeing how many photos of stop signs we can come up with for him? Since he’s already using Google to find photos online, I’d like for us to share photos that we’ve personally taken. The easiest option is to take a photo of a stop sign in your neighborhood or if you’re feeling ambitious you could find some interesting place in your area that has a stop sign. Or maybe you happen to have a vacation photo with a stop sign in it?

I know there are readers all over the world. Hopefully we can get some different designs and languages, but any stop sign you can add to the collection would be great. If you want to write a few sentences about the photo–location, pronunciation for non-English versions, a bit about you or your neighborhood, a fun fact about the location (or the sign in general if you don’t want to reveal your location)–that would be awesome. Just keep it appropriate to a 6-year-old.

You can put your photo in the comments below. You can share it on Twitter (mention me so I see it: @aspiemusings) or my Facebook wall (https://www.facebook.com/MusingsofanAspie). Or you can post it on Tumblr, Instagram or a photo sharing site and get a link to me. I’ll put together all of the photos and notes in a post for Tommy. Let’s put a deadline of the end of the month on this so we all feel motivated and such, executive function being what it is around here (especially mine!)

I’m going to start us off with this photo of a stop sign from a train platform in Korea:

Online Neurodiversity Lecture Series

In spite of its rather odd title, I’ve been enjoying the “No Mind Left Behind” lectures that @quarridors shared a link to ages ago. I’ve watched most of the first day of the scientific track, which I found more interesting than the bits of the “reality” track that I’ve seen. The scientific lectures have the benefit of being very short (no more than 20 minutes each) so the speakers are forced to get the point fast. Many of the lectures focus on autism, but ADHD, OCD, Tourette’s and other atypical neurologies are also covered. A scan of the lecture titles will help you narrow things down to your areas of interest pretty quickly.

Two lectures in particular that I enjoyed were the ESSENCE lecture on very early symptom identification and the lecture on the development of empathy. One thing that struck me in the ESSENCE lecture was the idea that very young children are often diagnosed based on the type of doctor that they see. ASD, ADHD and Tourette’s can look similar in two- and three-year-olds, so a child who gets seen by an ADHD specialist at that age is more likely to get an ADHD diagnosis while a child with similar symptoms who gets seen by an ASD specialist first is more likely to be diagnosed as autistic. The lecturer also said he believes that children younger than 3 with hyperactivity symptoms should first be evaluated for ASD before ADHD is considered.

The lecture on empathy by Chrisopher Gillberg was fascinating because he is the person who coined the term Empathy Quotient and his beliefs about empathy are so different from Simon Baron-Cohen’s (who developed the infamous EQ test). Gillberg takes a very neutral, scientific view, avoiding the sort of emotionally charged language we usually see associated with empathy and autism, which is refreshing.

Surveys

This weekend I brought over a bunch of survey answers from Survey Monkey. Yes, people are still answering the adult autism surveys! There are links to all of the survey posts from the final survey if you want to check out the latest additions.

Thank you to everyone who helped me refine the cover art last week and cheered me on. That last mile was more difficult than I anticipated. Now I need to do some promotion so I can get my giveaway idea off the ground. Strangely, I’m really good at promoting other people’s stuff and am probably going to be terrible at promoting my own.

Another Adult ASD Research Study

This week, I received information on two more research studies. If you live to fill out questionnaires, are over 18 and have an ASD diagnosis, read on. Both studies are by being conducted by Kathrine Birt as part of her Doctoral research at Deakin University in Australia. The goal of the studies is to better understand the impact of Autism Spectrum Disorder (ASD) diagnoses on intimate couple relationship development (in adulthood).

The first is a questionnaire that takes about 20 minutes to complete. To participate, you need to be over 18 and have an ASD diagnosis. You don’t need to currently be in a relationship to be eligible, but if you are in a relationship, you’ll be presented with additional and more detailed questions. (I’ve completed both questionnaires, because I like to be sure I know what I’m sharing information about.) More info about the first study is here.

Study number 2 is for adults with ASD and their intimate partners. Both partners must be over 18 and one must have an ASD diagnosis. The questionnaire for the individual with ASD takes about 30 minutes to complete. After completion, a link is provided for a second (10-15 minute) questionnaire to be completed by that person’s partner. More information about study #2 is here.

Note that for both studies, clicking the “continue to study” button on the first page takes you to a second page with more details about things like the type of information collected, how the information will be used and privacy protections.

Not Quite a Hippity Hop

This is my new exercise ball:

I’ve been using the exercise ball at the gym after my twice-a-week workouts and decided I needed one at home. It’s a fun sensory toy and a good way to stretch and release the tension that I seem to perpetually carry in my upper back and shoulders. Once, a yoga instructor who told me that I carry my negative emotions between my shoulder blades. My slightly less interesting explanation is that I unconsciously put myself in awkward postures that create tension in my body, maybe as a kind of stim. The exercise ball is a good way to consciously check in with my muscles and release the tension so it doesn’t build up into nagging injuries.

Sadly, it doesn’t have a handle so I can’t hop around the living room on it.

Some Girl Stuff

Last week Asparagus Girl wrote a blog post about perimenopause and Asperger’s. Not much has been written about menopause by women on the spectrum so I was excited to see her tackling the subject. The post mainly focuses on mood swings, which should be called mood slingshots or mood boomerangs or something more violent and dangerous and in line with reality.Think PMS on steroids.

I’ve noticed an uptick in meltdowns over the last few years as my hormones become more wacky. I’m definitely more irritable, too, and sometimes I find myself in a strange, unpleasant moods for no obvious reason. There’s other stuff–some that’s TMI even for me–and taken together all of these changes have me wondering if women on the spectrum experience perimenopause differently from typical women. Not necessarily if we have worse symptoms, but if our funky brain wiring creates unexpected side effects of the hormone fluctuations that precede menopause.

Predictably, this isn’t any substantial research on autism and menopause. Like a lot of aspects of being an autistic adult, I’m finding the best source of information is other women who are going through or have done through the process already.

Yale Autism Seminar Video Series

I’ve been watching the Yale Autism Seminar video series (available free from iTunesU). It’s advertised as the only autism-specific college course and is basically a chance for you to sit in on the lecture portion of the course as it was given at Yale a couple of years ago. The videos cover a wide range of topics, with a strong focus on childhood autism. Each video is a 60-90 minute lecture on a single topic. A few of the lecturers include videos or other visual media to illustrate key points, but generally think “text-heavy Powerpoint presentation” for the lecture format.

Because each topic is covered by a different specialist, the quality of the lectures varies. I especially liked “Communication in Autism” by Dr. Rhea Paul. It was packed with information about how children develop language from birth through adolescence. I’ve also enjoyed Dr. Ami Klin’s presentations.

Be forewarned that there is triggery content in most episodes–not so much the factual information but the language that many of the lecturers use and sometimes their attitudes toward autistic people. I consider myself pretty resilient to triggery content but I can’t watch more than one (and sometimes only half) every few days. It’s eye-opening to see how professionals who work with autistic people view autistic people.

Not Very Neanderthal

Back in March I spit in a little tube and sent it off to 23andme to get my DNA genotyped. Last week, I finally received the results. The biggest surprise is that my body doesn’t make the lactase enzyme. I guess I’m lactose intolerant but didn’t know it? My 40s are turning out to be a banner decade for stuff like that. I also have an elevated risk for Type II diabetes. That’s good to know, because I can actually do something about it. Not so much on the elevated risk of Alzheimer’s or restless leg syndrome.

There are some fun facts among the results: I can blame my higher than average caffeine consumption on my genes and I have a significantly lower than average percentage of Neanderthal DNA (in the 8th percentile). I never put much stock in the aspie-Neanderthal theory, but I gotta admit I was curious.

I Made a Thing

I’ve been putting my Adult ASD Diagnosis series together into e-book format. This is what I have for a cover design at the moment. Yeah? No?

I’ve added about 5,000 words to what’s been posted here on the website: primarily background material about ASD and the DSM-V criteria plus a big list of questions I developed to help people identify autistic traits in themselves. My main goal in making it into an e-book is reaching a wider audience. When I first went looking for information about ASD, I went to Amazon.com and did some web searches. Neither of those was very helpful. Unfortunately, I didn’t discover the blogs of autistic adults until later.

The material that’s posted on the blog will stay, so no worries about anything disappearing. I’m also hoping that I can use the proceeds from the book to do some giveaways here. I thought about donating to an autism-related charity but then I thought “hey, I know plenty of autistic people!” and wouldn’t it be better to do a giveaway of something like a weighted blanket to an autistic person who will directly benefit from it. I have no idea how this is going to work, but that’s my dream outcome.

ETA: I accidentally fell way behind on bringing over the survey replies from Survey Monkey for the final survey ! Executive Function fail. I’m so sorry and am in the process of getting caught up. There are about 20 additional responses that I will post this morning.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.